My Rheumatology department.....

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As5567
As5567 Member Posts: 665
edited 31. Jul 2015, 13:51 in Living with Arthritis archive
They are totally useless. This will be the second time in under 1 year they have not renewed my prescription for my biologic drug, so I'm now due to miss a dose tomorrow! Health care at home can't get in contact with them (Which is no surprise, I'm still waiting for a call back after leaving a message weeks ago about some side effects) It's just so unreal how badly my local Rheumatology department is actually run, I have very little confidence in their treatment at the best of times, and when something is finally working I'm now going to be missing a dose for who knows how long.

Words can't describe how angry I am right now.

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  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    I don't know if you've already gone down the complaints route previously, but it would be worth getting in touch with the PALS(Patient advice and liaison service) at the hospital to discuss your difficulties and dissatisfaction to see if they can help.
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    I'm sorry. I know you've had a rough ride for some time and it must be very annoying and upsetting when you finally get on a med that works only for it not to appear.

    Daffy suggested PALS but I've a feeling that, in Wales, it's the Community Health Council that one contacts.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
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    Just a thought, but is it worth asking your GP for a referral to a different hospital if you are mobile enough to get there? I know that in rural areas you can be a long distance from the nearest big hospital so it may not be an option.

    Deb
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
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    I think making a complaint is my only option this time, I have made complaints before and always ended up dropping things as her care did improve. And I did feel guilty for making a complaint against my doctor but it's not her who will have to suffer when left without medication, and from talking to other people in the waiting room it's not just me who has been having bad care from her.

    it's late Friday and the prescription still has not been renewed, Healthcare at home called me first thing in the morning like they said they would to update me and again this afternoon to let me know they are still unable to get hold of anyone in the department (Glad to know it's not just me who has difficulties)

    My injection is due today and so far I'm ok but as always the last few days I have noticed more stiffness and pain, hopefully I can get my medication by early next week
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
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    I know it's not easy but I do think it would be a good idea to go down the complaints route and uphold the complaint. I totally understand why you'd withdraw when care improves but the overall pattern shows that they cannot sustain delivering good care. I don't think it's acceptable to miss doses of medication and it is a more than valid reason to complain again.

    I'm sorry this is happening to you, especially after the difficulties you've had with your health. I hope they can get their backsides into gear early next week.
  • juliep123
    juliep123 Member Posts: 40
    edited 30. Nov -1, 00:00
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    I totally agree that you should make a formal complaint-it is not the first time that you have had substandard treatment and I bet you're not the only one ! I hope that you manage to get your treatment soon . It just makes me realise how lucky I am to have a good local service.
    Take care
    Julie xx
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
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    Still no prescription received by HaH and I'm now officially in full flare up mode, everything is hurting once again, sleepless nights, tight rib cage and shortness of breath. I'm not a good person to be around right now, feeling angry and frustrated that all of this could have been avoided.

    I have already started the complaints process and this time plan to see it all the way to the end. What I want to know is why has this happened AGAIN and what's going to be done to make sure it doesn't happen to me or anyone else in the future. Its not rocket science renewing a prescription, HaH tell me it's all done digitally and all that's needed is for her to confirm my medication, dose and frequency of injections on the computer which should take no more than 5 minutes of work. I fully understand that doctors are having to take on more and more workload and they're incredibly busy even at the best of times but renewing prescriptions should be something that needs to be done on time.
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
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    Sorry you're still having problems sending some gentle hugs. Mig
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
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    Oh AS, I'm so angry and frustrated on your behalf. This is unfair, even more so because it could have been prevented. Sending support and gentle hugs.
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
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    I think today I have reached rock bottom, I really don't know how much longer I can put up with this pain.

    I've still not had any medication, I finally got a phone call from my doctor early this week with pathetic excuses and trying to fob me off with rubbish as to why my prescription hasn't been renewed. She wanted me to have blood tests before she would renew my prescription....more delays.

    Now she's not happy with my blood tests and is insistent that I have some sort of infection somewhere because my results were so bad....and the best part is yet to come, she wants to see me in clinic to discuss my medication and blood results....on the 18th of August! I'm 100% sure I don't have an infection and this is just my AS in full flare mode. She did the exact same thing last year saying I had an infection and only after weeks of antibiotics, no symptoms and no improvements in blood results did she finally accept it was just my Arthritis.

    All of this stress is not helping matters I'm sure and I am trying to take things easy but I'm just so angry that all of this could be avoided. Which ever way someone looks at this my doctor has messed up and should have asked for bloods 8 weeks ago when HaH were asking to renew the prescription.

    I really don't know what to do for this pain right now, my doctor wants me to go back up to 20mg pred but I refuse to up the dose again. I've been on them for over a year and I'm not going to reverse the hard work I've done cutting the dose down to 4mg. My only hope is that my pain consultant can give me something to help manage this pain while my medication is being sorted.

    I feel like it's a never ending battle since I've changed consultants, every single time I begin to make good progress something out of my control goes wrong!
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
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    You have my utmost sympathy. I'm fairly sure that, in your shoes, I would feel as you do. It must be even more galling given that you went through the same process last year and have just virtually weaned yourself off the pred.

    Being one step removed though, I guess I can also see your consultant's point. If she prescribed the meds for someone for whom, according to the blood results, the meds should be witheld, she could be in for big trouble if something went wrong.

    It must be much worse given that you had no such problems at your previous hospital. I just hope it can all be resolved, satisfactorily, sooner rather than later.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright